Tag: invisible illness

I haven’t talked much on this blog about pain. In fact, for a long time, I preferred to ignore the topic.

Many of my friends in the invisible illness community have concurrent diagnoses of Complex Regional Pain Syndrome, and within my own family, my sister has been dealing with chronic pain for most of her adult life. It is a debilitating and exhausting challenge for the body and mind.

I previously had neuropathic pain with my Dysautonomia. Peripheral and abdominal mostly. And then I sustained nerve damage during a gynae surgery three years ago. However, the distractions of my primary diagnosis meant that it wasn’t immediately clear the surgery was the cause of my pain. I’d had a steroid injection to the site after the surgery, then gradually over time, my pelvic pain returned and increased. It affected my gait and had a dramatic impact on my mobility. Walking with a cane possibly exacerbated it, but without it I would have been unable to walk further than ten metres. It hurt so much. The pain extended from the left inner pelvis, down the middle of my left leg into my ankle. I found osteopathy helpful. I took pain medications (gabapentin and oxynorm) and modified my life. I thought that it was just another curve ball thrown at me by my dysfunctional body. I didn’t connect it with the gynae surgery. Or at least, not until after the six months of methylprednisolone infusions; when my pain disappeared completely. That’s when the lightbulb went on for me.

When an awful symptom is removed and you experience life, pain-free, it makes you acutely aware of how much it was affecting your life. I realised both how bad that pain had been and how long it had been bringing me low. As I weaned off the steroids, the pain returned. I had another, more minor, gynae surgery. This time, the pain post surgery was excruciating. I was certain that some medical misadventure had occurred. The specialist in the hospital explained that they couldn’t find cause for the level of pain I was in. I agreed that a referral to the pain team might be useful. I was in remission and just had this pelvic issue to sort out. Eager to get beyond it, I was keen to try anything.

The Gynaecology Pain Team have been so wonderful. I see an anaesthetist, a pelvic phsyiotherapist and a psychologist. They believe that pain is exacerbated by a number of factors, and first introduced me to the concept of complex regional pain syndrome. This is what my psych wrote in her last clinic letter:

“We concluded that following 32 years of neuropathic pain from [auto-immune neurological disorder -Pandysautonomia] and three years of neuropathic pelvic pain she will, in all probability, have central nervous system sensitisation”.

That just means that my nerve pathways over time have amplified my pain signals. My body is in pain, and the pain I feel is more extreme than might be felt in the same scenario by someone who hasn’t been experiencing chronic pain for a long time. The longer you have pain, the worse it feels. But don’t worry, things are in hand here; I am managing fine with all of the measures we have put in place. I have another surgery scheduled for August, when hopefully we will have a clear direction for treating the nerve pain. I am hopeful we can reduce it significantly.

I thought there might be others who can relate to this part of my story. If you want to read more about CRPS, look here. If you are in New Zealand and have been diagnosed with Complex Regional Pain Syndrome too, you could join this facebook page. And for a quick overview of invisible illness (yes, CRPS falls into this category) have a look at this clever infographic by Victoria from www.burningnights.org. Thank you so much for sending me your infographic, Victoria.

I had a lengthy debate once, with the hubster and one of his friends. We were talking about ‘rights’.

I said there was no such thing, that human beings don’t have any rights at all. That rights are a construct we have built to make us feel that things are fairer. But they are not fair. Ask the child suffering from malnourishment, whose parents have both died of AIDS, if they understand their rights and they will look at you with blank confusion. Yet here in the West, we make sure everyone in the hospital gets a brochure so they know what their rights are. We protest against the inequities of life in an attempt to right the balance. We talk about right to life, and right to shelter. We are deeply offended when our rights are breached. Because they are our rightful expectation, right? Hubster’s mate was outraged by my perspective. He found it ridiculous, which didn’t offend me, because I’m not that righteous about my view on rights. I’d love to know your opinion on the matter. Here’s mine, for what it’s worth.

We are all, in any given moment, subject to the kinds of events that render the socio-political construct of ‘rights’ useless. What rights did the victims of the Beirut bombings get to exercise last week? The Chinese flood victims? People struck down with illnesses? Mothers who can’t conceive? Children born drug addicted? Victims of sexual abuse? Are the rights we cling to so idealistically, only for the lucky people? Is our attachment to our ‘rights’ what causes us pain when our circumstances ignore them?

I listened to an interview with Dan Carter on Newstalk ZB the other day. The sportscaster was asking him about his stunning final game with the All Blacks in this year’s World Cup. He made this comment:“Well, Dan, you deserve to go out on a high after the stellar career you’ve had…”
Dan interrupted him: “-Um, no. It doesn’t work like that. People say I deserve this or that, but the truth is, sport doesn’t care if it’s your last game. Your opposition don’t decide to be kind so you can go out on a high. Injuries happen, losses happen. It’s just part of the territory. I keep smiling about that game because it could have been so different.” I am paraphrasing, but that was the gist.

It struck a chord with me, because I’ve noticed it myself a lot lately. When people hear about what has been happening with my health, and with my new work as a plus size model, the most common reaction is “Oh Rach, that’s great! You deserve it after all you’ve been through!” The human race loves fairness, doesn’t it? We love it when hardship is repaid with success. We love it when difficulty is answered with a time of ease. It suits our inner justice-o-meters.

But I don’t deserve wellness any more than the next person. It’s a gift. For every one of me, there are thousands of people suffering with Dysautonomia who are struggling every. single. moment. of. every. single. day. They’re not less deserving. It’s not like the universe has weighed us on a massive scale and decided that I get to experience feeling well because I deserve it more than them. Just like being a western middle class citizen of the world isn’t an inalienable sign that I am entitled to have ‘rights’. Some things, some life things, are just pure chance, pure kismet, absolute, joyous, happy luck. A gift. At this time in history, in this body I got, I get to live a life full of benefits. I’m not more worthy.

I’m fortunate.

So my question is, if you have also been gifted with health, either just recently, or maybe you’ve been lucky enough to have it your whole life… have you been making the most of it? Are you throwing yourself into things and enjoying the gift of chance that enables you to live with freedom? Don’t waste it. Spend it well. Do it for all the people out there who can’t.
Take the chances you have been given.
Be bold. Step up. Step forward. Speak out. Stand tall.

XXX

This is a picture of the most stunning, hand-lettered poster my friend Tracey Hassell sent me from Perth. She asked me for my favourite quote, and then this appeared in the mail. I love this quote so much, because for me it is a reminder of my purpose. I will never forget the lessons I have learned over seven years of illness. I will never forget that people are still suffering while I am not. And that is a greater gift than feeling well. I feel deeply privileged to have walked that road alongside some very beautiful souls. There’s something in experiencing all that which feels more right than most things. I get it. I have no rights. I am alive, I feel well. I am stupendously fortunate.

Today I want to tell the story about when I copped flak for telling it like it is. For telling the truth of life with invisible illness. Sometimes that truth is painful and upsetting. Sometimes it is traumatic. I tell my stories because there are others who cannot tell theirs. I speak up. And sometimes I get knocked down for it.

It has been a wrench for me, to spend less time on my blog this year. I’ve been doing a course run for people in the disability sector. It has kept me really busy, and my improving health has increased my ability to be out and about. But I have missed you. This blog is very very important to me. I was going to say it was a piece of my heart, but the truth is that this blog IS my heart. My heart for my family, my heart for people suffering with invisible or chronic illness, my heart for our world, my heart for myself. It’s my heart, spilled onto the page, shared with people so that people like me can feel less alone and so that I can, too. Shared because I know how important it is to share the realities of life with invisible illness. I know that, because you beautiful people have told me that. People who are not sick themselves, and people who are. People who care. You are an extraordinary bunch and I am glad you came to my corner of the internet.

Publishing out here on the world wide web is a broad platform. Anyone can read your words. Everyone who does, will read them through their own lens and make of them what they will. Being misunderstood about my heart is a painful thing. But it is a part of blogging. In that sense, it is no different to being out in society. People react to you in varied ways. Not everybody likes you. And just in the same way that invisible illness is overlooked and misunderstood by society at large, sharing my stories here doesn’t guarantee that my heart will be understood.

Last Sunday I awoke to an awful thing. Someone I respected and had a connection with through my course, had posted about the types of stories disabled people should not tell. In itself, that is just his opinion. He’s entitled to it. But one of my posts was linked as an example of what not to do. It’s a small thing in the grand scheme of things. But it was a very big thing for me, to have my heart skewered in the public forum that way, in a sector of society I am part of and care passionately about.

People who are disabled due to illness make up the largest portion of the disability community here in New Zealand. Our stories of disability due to illness are valid expressions of our lived experience. They are our own. We tell them in our own words and from our own hearts. It is traumatic to acquire disability. That person called for people with invisible disabilities to harden up. The words ‘portraying ourselves publicly as traumatically wounded’ linked to a post I wrote about dealing with the question‘how are you’.

Every person in the disability sector has their own unique way of ‘being’. That’s just part of humanity, we express ourselves with infinite variety because we are diverse, because self-expression is the stuff of art, of poetry, of what makes us people. Competing over who has the most valid disability voice is counterproductive to shaping a society where all people are valued equally. Suggesting as they did, that our unique voices should only be used to tell ‘way to go’ stories, is ridiculous and dangerous. It is the opposite of raising awareness and a worrying call for self-censorship which does not serve the invisible population. We speak out because our voices can be heard when our disability can not be seen.

I was gutted about receiving this flak because it came from within my sub-group of society. I see now that people with disabilities acquired through illness are not necessarily considered part of that group by people who fit a more traditional definition of ‘disabled’. But we are part of that group. How much stronger could our presence in society be felt if we worked with each other, rather than against? It seems to me, that the disability sector has a lot of distance to traverse within it’s own community, if we are to ever hope for true understanding outside of it. How can we expect understanding and acceptance from others, if we don’t practise it ourselves? Why all the political bullshit? Must we? Why can’t we just be kind and move forward?

I thought about putting on a flak jacket and advancing into the fight. I don’t like injustice. I don’t like bullying. I don’t like influential people being mean and thinking that is all just part of a provocative debate. But I can’t build a kinder world by being mean myself.

Instead, I have written to that person and to the people in my course. I have withdrawn from the programme because I can’t continue there with any joy. I don’t need that course to make a difference. I don’t need to graduate to know that I have something to offer. I am me, that is enough. So I returned here to my blog. I don’t write for the people who don’t see my heart in my words. I write for you. I write for me. I write to shine a light on the things not seen. I see you, out there. I hear you. And I hope if you are writing your stories too, that you won’t let a flak attack stop you from sharing the things that matter. And if you are reading the stories of people beneath the radar, keep showing them your support. We are always stronger, together.

Gollum and his Precious hung out with our family over the past week. We’ve been listening to the BBC audiobook of the Hobbit, during car travel. It’s a brilliant way to stop sibling rivalry; school holiday road trips usually mean backseat disputes, but Tolkein’s storytelling mastery got us there and back without a single spat. I was enraptured and horrified all over again as Gollum keened for his precious ring; obsessively muttering to the object of his fascination, his precious, magical ring. He polished it so much, turned it over so often that it began to form a persona of it’s own. It became his companion, his torture, the cause of such a myopic world view that he stayed beneath the mountain, keeping to himself, convinced in his own circular thinking that the ring was his everything.

And while the school holidays and The Hobbit have been occupying part of my brain, in the background I’ve been doing a lot of thinking. About accessibility, what it means. And about disability and what that means. My views on all of these things have changed over time, broadened, really. I suspect I will continue to work on them as I grow up (!)

Before I got sick, six years ago, I was a typical able bodied person. I took for granted my abilities to get around and I experienced very little difficulty getting access to the goods and services I needed. By the end of last year, walking the length of a carpark was out of the question. Standing for more than five minutes, impossible. So I made use of hire scooters when they were available, or avoided outings that were beyond my ability. And despite the fact I have had mobility parking privileges since my diagnosis, to most people, my disability was invisible. Not ‘looking’ sick or fitting the ‘disabled’ stereotype meant a difficult shift in my experience of society. Every frustrating interaction with people about what was wrong with me was a grating abrasion of misunderstanding that would slowly scab over, only to be picked at again and exposed, over and over. A kind of circular torment for my mind.

The programme I am currently involved in is all about leadership for social change. So of course, I’ve been thinking about social change. It is very dear to my heart. How much I would love to wave a wizard’s staff and make all of the world a kinder place! In the absence of that (where’s Gandalf when you need him?) I’ve been cogitating over language, and how it can have a profound effect on understanding. But also about how a conversation between the society at large and people who are considered disabled seems a lofty kind of starting point.

Like any conversation without a common vernacular, misunderstandings occur. In just one example, our classic Disability Symbol shows a person in a wheelchair on a blue background. It’s globally recognised. It is by nature simplistic, because it is a symbol, a representation. Short-hand to describe a designated access point for people who have difficulty being mobile. But somehow, the symbol has pervaded our collective concept of what being ‘disabled’ actually means. A dis -ability to walk. Maybe, the symbol was just born from a notion of disability that is steeped in stereotype. I don’t know if there is a better way to symbolise disability in a pictograph. It is what we have and it serves it’s purpose. But does it also serve our thinking? Can it help us to reignite a discussion and develop a shared understanding?

For a very long time, I struggled to accept that I too, was a legitimate member of the disability sector. I felt I had to explain myself; should I get a bumper sticker to defend my use of my own mobility card? I felt this most keenly in the company of people who were disabled in the literal meaning of that symbol. People in wheelchairs and those who champion their rights. As though my own limited mobility was in direct competition with their more evident disability. And so whilst I felt completely forgotten by the world of the able-bodied ‘well’, I felt unable to sit comfortably in my new designation. Invisibly disabled. A position that required my own elevator pitch of explanation, to anyone who cared (and even those who didn’t) that not all disability is visible. It saddens me that some people within the disability sector find this hard to get to grips with. How can we work together as a community if our diverse types of disability are not recognised by each other?

Recently, I posted on my blog’s Facebook page about the new working party that has been set up to provide more comprehensive and comprehensible data on the disabled community. It’s a move I welcome. I have often tried to research local data related to people with disability. There is not enough. The right questions are not being asked. We represent 24% of the population, and yet so little is known of who is in this sector. What I can tell you, is that:“The most common cause of disability for adults was disease or illness (42 percent)”.
You can find more general information in the statistical summary, here.
It’s interesting, that statistic. I suspected, when I began to research for this piece that most people, when asked their definition of disability, may not even include sick people. Tell me, do you think that illness and disability are distinct from one another? There are hotly debated positions about what it all means. But does the definition matter as much as we think it does?

Or are we just a little bit precious about it?

As my friend Carly put it : “disability has different meanings to people with disability and without. For people without, it means impaired, lesser, poor them, other, pitiful, a loss of life, inspiration porn. But for people with disabilities, there’s a sense of pride, community, achievement, normalcy”. Carly is an appearance diversity activist. Her work spans all manner of societal attitudes toward people with a variety of disabilities. Her blog is well worth a look. Her comment got me thinking about our views of disability. And all the rhetoric within the sector. I thought that when it all comes down to it, I just want to find the bridge that connects the diverse worlds within the disability sector to the world of non-disabled people, to increase understanding and connection.

And because words are my go-to method for making sense of life, for me it begins here. Within the language.

I looked up definitions of disability. There were many, very wordy, carefully considered descriptions. I thought about how bogged down we get in all that verbosity. And then I thought I should ask children; I canvassed the mums in my wider networks on facebook. The mainstreaming of education for children with special needs has had a profound impact on the curriculum and the views of the present generation of school aged children. Where most of the pre-school children I asked had a narrower definition, like Ben; “their foots don’t work” or Asha “they ride little cars”. School aged children generally talked about the ability factor: “not being able to do things as easily as we can” (Carter), and “(disabled people) have got a little problem that makes them a bit different” (Xavier)… and this, from Natasha, “it’s not something wrong with you, it’s like you have a gift to see things differently, and you may look different but really you’re not”.

And I wonder if I’ve been tying myself up in knots over all the layers of meaning, the symbology, the realities of an incredibly diverse society. We are not the only group skirting the statistical soup of New Zealand society. We represent, together, a good number of New Zealanders, but we are as diverse within our own sector as they are without. I suspect, social change that moves us away from the ‘othering’ begins when we stop considering ourselves as so different. When our own obsessions about our sector, our precious, carefully built ring fences break open for a new view. So, 24% of New Zealanders are disabled in some way. Not the same way, but in some way. New and better statistical data might help us to meet the needs within our sector better. It might inform more discussion, debate and dilemma. It may help us better define our strongest identifying characteristics.

But it occurs to me, that social change can only happen when all of us can see that diversity itself is what have in common. All of us, abled, disabled, invisibly or visibly, othered or outered, mainstream or fringe.

I’ve been enjoying the writing prompts that are sent to me by a website I write for.The Mighty are a wonderful platform for sharing stories that illuminate the lived experience of people with disabilities or invisible illness, or the stories of their caregivers and loved ones. Their tagline readsWe believe in the power of stories,
the strength of communities
and the beauty of the human spirit.

Recently, they asked this:

Describe a time you saw your disability, illness and/or disease through the eyes of someone else.

I haven’t written this piece for them because it doesn’t really fit their format, there will be other things I can write for them. This is fiction, but close to my reality at various times in my illness.

See, their prompt got me thinking. It’s hard for me to see my illness through the eyes of someone else. I don’t think other people have to feel any particular way about it. But I wish with all my heart it was easier for others to understand it. I fully comprehend the perspective of well people, because I have been one. The sad fact is, that other people very rarely do see my illness. Even when I am right in front of them talking to them about it. So I began to think about who I was before. I think ill people need to remember who we were before. It helps us to understand the gap between. So this piece kind of evolved out of the idea of what might happen if the ‘other me’ met the ‘sick me’ at a school parents’ function. What would each of us think? And how hard would we really try to understand each other?

It’s difficult. Attending these school parent functions. You’d think it would get easier, the more you do. But no! There’s what to wear and the fuss with hair and makeup. There’s making sure the husband is home in time and the babysitter is up to speed with the kids’ routine. All the way to the function, we’re lamenting the fact that we never seem to get a babysitter so we can just go out and enjoy ourselves as a couple. It’s always for work events or school functions. Hardly ideal dates. We promise we’ll do that. But I wonder if we will. We’re always rushing about and there’s no time to pause and enjoy. It’s difficult, contemporary living. The juggle between work and life balance.

I know my husband will be off talking with a few of the other Dads within minutes of our arrival. And so I locate my inner steel. I’m wearing the right shoes, so I pull myself up taller, matching my heeled posture. A glance around the room tells me I was right to prioritise the pedicure over the gym this morning. Although clearly, most of these women managed both. Polished, white teethed smiles flash across at me as I move over to a group of Mums I know. We are still uneasy together, but I take a deep breath and remind myself that we are all in the same boat. We greet each other cheerily and the conversation resumes about the teacher. She is all slender sophistication, that one. I spot her mingling with another group. A father gazes at her with adoration in much the same manner as I have seen his son. It’s sweet. I self consciously watch the diamonds flash on a finger wound around the stem of a wine glass.

Wine. That’s what I need! I smile back at the familiar faced group and make a quick detour to the bar. Hubby catches my eye and nods a silent order. Fortified by familiar feel of the cool glasses in my hands I deliver his and make my way back towards the huddle of women I’d been chatting with.

On the way I notice another mother perched in the shadows along the side of the room. She looks a little pale and is a bit hunched over. Uncomfortable in her own skin. I feel for her, and I wonder if she is a bit socially awkward. Then I notice her cane. Oh, she must be that sick one. I heard some of the mums talking about her once. Her son is a playground troublemaker. I remember making a mental note to avoid adding him to the birthday party list. Apart from looking a little unsure, she doesn’t really look sick. I couldn’t remember what it was that was actually wrong with her. Something weird. Maybe she’s weird? I thought. She doesn’t usually come to these things, I wonder why she is even here tonight, if she is not even going to mingle? And then, in spite of myself, I am walking towards her, smiling and pulling up a chair alongside her. I really hope I am not going to get stuck here for long. I do find myself in these situations, don’t I? My hubby always rolls his eyes at me when I do this.

Talking with her isn’t easy. She is struggling to smile and make small talk. Her husband looks our way and sends me a thankful smile. Oh no. Now I am really stuck. But before too much longer, we have relaxed into a conversation. We talk about our children and the upcoming school play. There is some laughter and commiserations about the hassles of dealing with babysitters. Hard to find good ones these days. I find myself looking at her intently. There is a shadow of someone else around her eyes. Did I once know her, before she became ill? And even though I am internally telling myself not to, I ask her about how she got sick.

She seems hesitant to talk about it, but I settle in to listen. She exhales and begins to tell me her story. I was much like you, she began. And what she told me filled me with discomfort. She got a bad virus (who hasn’t at some point been felled by a virus?) but for her it was the start of something much worse. Her heart stopped working properly. An abrupt change in her ability to stand, dizziness, nausea, the loss of other functions. The list went on, she said, but she spared me the details. Everything, she said, that bodies do automatically. I began to imagine what that kind of broken body must be like to live in. But I didn’t want to imagine it for long. I’m ashamed to say it, but hearing her story made me wonder if I could handle what she was going through. Six years she’s been sick for. Almost the entire length of her son’s life. I didn’t think I could. My mind flashed through all the normal tasks of a normal day. No, there is no way I could manage being sick like she was. I wondered, briefly, how she did it. And then a desperation to be talking about anything else overcame me.

I thanked her for telling me all about it, I think I told her something like she was brave. I think I patted her hand. She thanked me for coming over, looking across towards the huddled groups around the bar and graciously giving me an out. Thank goodness, I thought, as I asked her if I could get her a drink. She asked for a water, so I went to get her one. When I returned her husband was back with her. She was looking paler. He had leaned in close to hear what she was saying. I unobtrusively put the water on the table near her knee and slunk away to my own husband’s side. His hand slipped into mine and I squeezed his back. I doubted if I could explain to him how glad I was to have the ordinary troubles of hair, makeup and babysitters, the general ‘difficulty’ of going to a school function. Then someone asked me about the woman I had been talking to, the one, you know, with the boy who was often causing trouble. I looked across to where she’d been sitting and she was gone. And I told them that she was really nice. Much like us. Only dealing with a whole lot more than most of us understood. I saw the smile flicker off the face of the asker. The inward groan. I didn’t like seeing my thoughts etched out so plainly on someone else’s face.

And then I was drawn into a fun conversation, ordering another wine and moving on. I shook off my unease about the things she said, the alternate realities I’d rather not consider. There was nothing I could do, was there? And she’d gone home. Really, there was no point in ruining a great night. These school parent functions are great once you get into the swing of things.

I do think of her every now and then. When I am organising a party list, or doing mother help at school. It might cross my mind briefly when I am loading groceries into the back of my car. Or sometimes, when I am looking at my face in the mirror. And like the first time, the thoughts come and then they go. Because who am I to think I have anything useful to offer? It’s difficult. It’s a juggle. And I move on.

____________________________________________________________________

It’s difficult. Attending these school parent functions. You’d think it would get easier, the more you do. But no! There’s all the pre-planning and resting up that I need to do for the ability to do one night out. Extra medication. Mental fortitude. And there will be the payback afterwards. Days crashed in bed. More wasted time while the tasks for the family mount and mount. I don’t get to many of these sorts of things, but I try to attend one or two a year. And I love the drive there, hand on my hubby’s knee. Feeling like we are on a real date, even just for the time in the car. The beauty of the city lights reflected on rain soaked streets. The privacy and togetherness of our car coccoon. Just us.

I didn’t manage to do my hair or nails, those things seem to have gone by the wayside. I did manage makeup. I check it in the passenger mirror. The woman looking back at me is puffy faced, tired and pale. I wonder where my real self is hiding. Somewhere on the other side of illness. I wonder if she is waiting for me there. If we will recognise one another. But there is so much for my husband and I to chat about while we make our way through the traffic that I am soon distracted from my own reflection. Any alone time together feels like we’ve rewound to the early days. I look across at his profile and marvel at how I still feel this way after so long. After so much water under the bridge. He’s a good man, my man. I wish he didn’t have the dead weight of my illness to carry with him everywhere he goes.

When we arrive, the difficulty of walking from the carpark to the venue takes it out of me. I send my husband into the throng and perch in the shadows of the room, hoping that no one will talk to me. Hoping that my hammering heart will slow to a calmer rhythm and the planes of the room stop warping and fading on the periphery of my vision. Hoping the nausea will subside so I can form words without retching. I want to be at home. I wish I could fast forward to the end of the function. Why am I even here, if I am not able to mingle? I see that my hubby is having an animated chat with someone and it brings me relief. Maybe if he talks to five or so people, we’ll be able to consider the job done and go home. I wonder why I push myself to be part of a group of people who don’t actually want to know about me, about us. I don’t know. But somehow, I know that I desperately want to be a part of this world, to know about them. I remember, in flashes of colour and animated laughter, what it felt like to be out with friends, drinking and talking about interesting things. So often these days my only conversations are about illness. With doctors, with other patients, with myself.

And then one of the mothers comes over to talk to me. She seems curious, and nice about it. It feels good to be able to explain why I am lurking in the shadows. I wonder if she can tell how much I long to stand and laugh in one of those sociable huddles. How I wish my son were more a part of things in the playground. And then, as fast as she arrived, she has gone. I am jealous of the ease with which she sways across to the bar in her incredible shoes. I feel the old uncomfortable conflict of opening up. My hubby comes back, he knows my best-before date has arrived. We make a move to go. I take a sip of the water she brought me and an unbidden sting in my eyes ushers me out the door.

I do think of her every now and then. When my son is left off another party list, or I can’t volunteer to help with a school event. Even when I am doing something as ordinary as filling in my online supermarket order. Or trying to find myself in the mirror. The thoughts come and then they go. Because who am I to think I have anything useful to offer? It’s difficult. It’s a juggle. And I move on.

Last month, I had to deliver a ten minute talk …about me. My story. It was part of the block weekend for the Leadership Programme I am doing. The programme is about leadership in social change and it is challenging my thinking in lots of ways. I really prefer writing to talking (I know some of you will find that hard to believe!) and speech making isn’t really my cuppa tea. But I started doodling, as you do. I doodled lots of question marks. And then I made a real cuppa.

When I returned to my doodles, I stared at those question marks for a long time. And it occurred to me that the best way to tell my story, was to do it using the defining questions of my life. There have been so many things I have wondered, but I pared them down to the bare minimum.
So! Here is what I came up with.

My Life, in Fourteen Questions:

I am a kiwi girl, born just after my parents completed bible college in Australia. My parents felt moved to work on the mission field in a third world country. So I was raised in Papua New Guinea, then I went to boarding school in Australia and soon after that, they went to China. These were the locations of my upbringing. In total, I attended 13 schools, four tertiary institutions and eventually moved back to New Zealand when I was 23 years old.

There were lots of things about my childhood that made me think. And one of the first big questions I remember thinking, was:

I liked to think about things as a kid. And I started to notice other odd things about our world. I noticed that when I was at the international school in PNG, there were more than forty nationalities of kids and everyone played together. Where we were from wasn’t even a factor in the forging of friendships. But when I went home to New Zealand on furlough, people teased me for coming from a place where the women wore grass skirts and showed their boobs.
I was an outsider in my own country.
I began to think,

In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:

But these deep questions were all overwhelmed by a far more pressing issue:

(Note to teenage self: Mum’s historial romance novels were not the place to search for this information. “She explored his mouth with her tongue” was a stylistic interpretation, not an instruction).

By this time, I’d been given the nickname Falling Tree because I was fainting a lot.
No… not because of boys (but there was plenty of swooning, too… I’m looking at you Morten Harket)! I made it through my final year of high school and got into a competitive Journalism degree at a Sydney University. I was ecstatic!

My well meaning Dad thought journalism would corrupt me, so I wasn’t allowed to do that course. But a year later, when I reframed my University ambitions to encompass a career path ‘better suited for a woman’ I was allowed to go. I embarked on a degree in Education and Teacher Librarianship. Instead of writing words, I planned to surround myself with them.
But I wondered,

It took me seven years to get that degree (it was a bit boring). Across that decade, I moved countries, got married, and divorced, and valiantly embarked on Project: Find a compatible Handsome Prince. There were quite a lot of frogs to kiss, so I used my knowledge of pashing with great determination. Surely one of those frogs would be him…?! And all of a sudden three wonderful things happened in a short space of time. I found my man, we bought our first house and had Beeand Little Zed. All my dreams were coming true.

Then one day I got the flu, and I never recovered.Can you imagine that? I was constantly dizzy and fainting a lot. But the faints were actually my heart stopping. I was fitted with a pacemaker to keep me ticking.

I asked a lot of questions during those early days of sickness, but the biggest one was

No one knew. Other parts of me starting going wrong: digestion, bladder and bowel function, temperature regulation, cognitive function, I couldn’t sweat properly, my pupils were not reacting properly to light, I had constant nausea and dizziness every time I moved to stand. My blood pressure and heart rate were all over the place. I began to experience burning, tingling and numbness in my hands and feet, I struggled through daily chores. I had to quit teaching and we had to take in home stay students to cover my loss of income. The fatigue swamped me. My gait and mobility started to change. Every day was an exercise in pushing through. Pacing. Planning ahead.

I ended up in front of a neurologist who explained that I have a progressive form of autonomic nervous system dysfunction called Pan-dys-autonomia. That covers all the automatic things your body does. I know some of you here might relate to that. What made my problem odd was that I had it without a primary diagnosis. Dysautonomia is common in late stage MS and Parkinsons, aspects of autonomic dysfunction affect people with spinal cord injury too. But the cause of mine was elusive. Six years of watching the progression, endless tests, treating the symptoms and fearing the decline and fall of my future led me to this desperate question:

That question was met with averted eyes and shaking heads. Do what you can with your family now, I was told. Before you can’t anymore. I didn’t like that scenario. We embarked on a proactive memory-making schedule. A family holiday, the prioritising of togetherness. And I researched. My research led me to other patients overseas. I listened to their stories, finally finding people who understood. I began to think deeply about the issues that face people like me. People with ‘invisible’ illnesses, disability and accessibility issues that aren’t immediately evident. People with rare diseases or poorly understood diagnoses. I wanted to know what could be done for them, too. The injustices of all those lives lived beneath the radar began to burn my brain.
It led to this question:

I was offered some work writing for an overseas blog. And I remembered that I like to write. So I started to write for more people, and even for myself. Blogging led me to ask many more questions, but for the first time I was beginning to see that it was leading me to answers too. About me, about my purpose, and the beautiful, simple idea, that I could do what I do best.I could write about it!

One day, I found a Youtube video by a specialist overseas who was treating patients like me, and getting results. My general physician didn’t want to know. So I pushed and I fought and I learned to use my voice with sometimes, quite intimidating doctors! I kept writing for The Invisible and they began to respond. I wrote for me and began to take action. Until finally,I found a specialist who had read the same papers as me, who had seen the same video. He started me on a new treatment regime in January and it is so far looking really promising.
Fingers crossed!

I know first hand that while we are all, to some degree,
defined by what our bodies can do and not do;
more powerfully, we are defined by
what we think,
by how we feel,
and by what we can do about that.

I think we have a responsibility to
help people understand
that our common humanity
is bigger than religion,
it is deeper than culture or race,
it is more practical than philosophy,
it’s broader than gender
and more timeless than life spans,
it’s our world’s biggest learning challenge
and it even transcends our physical abilities.

Those questions of mine have taken forty years to percolate. And I am just beginning to understand that they all point to the same thing.That we, at the heart of things, have more in common than we don’t.

I am so grateful to have found an authentic way to connect my heart for social change, to society.

“How did I get so lucky, to have my heart awakened
to others and their suffering?”

In the last six years I have met some incredible people. Connecting online with others who have chronic illness has been one of the greatest supports and encouragements of my journey.

For the whole of 2015 I will be deeply immersed in the Be.Leadership Programme. And that means, a bit less time for blogging. I have homework! And readings! And deep thoughts to “thunk” (!) I will still be here, doing what I do. I just might not be doing it quite as frequently. According to the calculator, I’ve been averaging four posts a week since I started blogging in May last year. That is a tough rate to match now that I am a bit busier. But also, I feel like it’s a great opportunity to broaden the scope of the Chronic-ills of Rach.

I have called on ‘My People’ to see if anyone would like to share their story in this space. I’m calling it the ‘Meet my Peeps Guest Series’. And I am so chuffed that you will get to read the stories of some of the people so dear to my heart. Each time I post from them, I will introduce them, tell you how we met and then you’ll hear their stories. There is a diverse range of guests, some, like me, have a form of Dysautonomia, but we’ll be hearing from people with other chronic conditions too. People with Invisible Illness, invisible disabilities and also people with conditions that are not invisible. They’ll be sharing with you their perspectives about getting through, getting on, and getting over the challenges they face. Welcome to the series, I can’t wait to see your responses to their heartfelt words.

Big love to you from me, remember, I’m still here! In between times, I’m just getting a little help from my friends. 🙂

So many exciting things have been happening in my life lately. Thanks to my friend Sheryn, I made a connection with an organisation called Be.Accessible who are passionate about creating social change in New Zealand. Their vision is for our country to be wholly accessible, so that anyone of us can just, be. It’s a vision that has a great deal of synergy with my own. My own efforts towards building awareness and understanding in our community here in New Zealand (and with people online everywhere) are all about that. About promoting understanding and acceptance.

I feel very strongly about helping people with ‘invisible’ illness and or disabilities, chronic illness and rare conditions that people find hard to comprehend. I write not just for me, not just for people with Dysautonomia, but for anyone who suffers the torment of not being understood, of finding judgement where they should find kindness. I use my words so that others might find something they can share with their loved ones. A way to explain what they haven’t been able to explain. Sometimes it is hard to find the words.

Doing that. Using my words, has brought me to a surprising place in my life. My health continues to deteriorate, but my heart and mind are filled with bigger and better thoughts than ever before. I saw my Granny today and she asked “Are you well?” and I could honestly reply to her “All is well with my soul!” I have a purpose and a direction that I never even knew was in my future. I thought everything was so lost to me. I thought all of those things were out the window. Gone. But here I am, about to embark on something new. The joy bubbles up from inside, how surprising and wonderful life can be!

Last night I attended an event here in Auckland, down on the waterfront. It was the graduation for this years participants in the Be.Leadership programme. The programme aims to mentor people into positions of greater social leadership by providing a year long programme of discussions and learning with some of New Zealand’s great leaders. Among other great initiatives! The program cost is $17,000 and this is fully funded for selected participants. I have applied (squee!) and I am waiting to hear what happens next… so watch this space!

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Last month I began writing for the parenting column of a popular Dysautonomia Newsletter in the States. And I met my editor, Ellen, online. Sometimes when you meet someone, just as it is in person, you just click right away. It was like that with Ellen. She understands me and we have had lots of wonderful email conversations, back and forth from one part of the world to another. She is a wonderful encouragement to me. Recently she sent me this song. It stopped me in my tracks. What a voice. What lyrics! Thanks Ellen, this song is my new anthem, it so perfectly expresses why I continue to find things that I CAN do. Life is calling out my name.
Here is Beth Hart singing “Life is Calling”

…and, the lyrics…
Sunday morning, the world’s still sleeping
And the rain keeps falling like angels weeping
And I, I feel the tears on my skin
They’re trying to tell me something
I listen

Blues and yellows tap on my window
And I let the night go with all my shadows
And I, I feel the sun on my skin
It’s trying to tell me something
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter, say it louder
Stay alive another day
Life is calling out my name

Perfect houses with good intentions
Where the happy families hide their broken dishes
And I, I hear the scars on my skin
They’re trying to tell me something so
I listen

Life is calling, life is calling
Life is calling out my name
Make it matter say it louder
Stay alive another day
Life is calling out my name

It’s the wind over the ocean
It’s the secrets in the sand
It’s all trying to tell me something
So I’m listening

Life is calling, life is calling
Life is calling out my name
Make it matter just say it louder
Stay alive another day
Life is calling, life is calling
Life is calling out my name

If I met you, I’d smile. Maybe you’d ask me how I am. And my smile might wobble a little. It’s not a question I can easily answer. I don’t want to lie, but if I told you the truth of how I am, you might do that little sliding sideways step and make a mental note not to get stuck next to me next time. So I’d say“…fine, thanks. How are YOU?” and we would talk about that instead.

But I think it might be time to break out the real answer.
“I’m not doing so well”. Thanks for asking!

My name is Rachel and I have a neurological disorder that is a dysfunction of the autonomic nervous system. That means, all the functions of the body that are automatic. Breathing, Heart-beating, Blood Pressure, Temperature regulation, Digestion, Bladder and Bowel functions. Just a few of the things that make our bodies efficient places to live. In my body, all of them are affected. I have a pacemaker to assist my heart and medications to help with the rest. They are the ambulance at the bottom of my cliff. But when you look at me, you can’t see how I am falling. They call my illness an ‘Invisible Illness’. It isn’t easily apparent. On my worst days, I’m in the emergency department, or here, in my bed. Dealing with all manner of broken body problems. I might be tapping away on my keyboard. Connecting with the world in the best way I can, out of sight. But on my good days, when I am visible, I might be beside you, chatting about how you are, and smiling. Looking fine.

There is no cure for Dysautonomia. My doctors haven’t found a cause, but for some, a cause may be found and a treatment begin. For the majority of us, ‘treatment’ means symptom management. A regime of medications and interventions; it is a ride on a runaway roller coaster in an abandoned theme park. Frightening, unpredictable, overwhelming. Autonomic dysfunction like mine is more commonly seen in late stage Parkinson’s or Multiple Sclerosis, but without a primary cause it is rare. There are few of us in Australia and New Zealand, but we are resourceful! We have found each other on the internet and we work together to find information, resources and hope. I cannot imagine how it must have been for people with rare diseases before the internet. It makes me want to cry imagining how very isolated they must have been. I am so grateful for my finger tapping friends all over the world. Shouting a two dimensional hello into the ether. Arms reaching far across the digital divide with comfort and solidarity.

So, How am I? Really?
So frustrated, so scared. See, I have two kids and they are still so little. Zed is six and Bee is nine. I linger at bed times, holding them in my arms, always for just a bit longer. My lips against the hair on the tippy top of a warm head, my cheeks pressed up against the moist stamp of little hands. My thoughts, always on what the future may hold for them. My heart in my mouth and my own hands grasping at the time slipping right through them. I want to be the mum who walks beside her grown kids, head up high, laughing and joking. Not the incontinent invalid, too spent and struggling to keep pace with the conversation.

I’m heartbroken, so sorry. See, I have this husband. He’s the best man I have ever met, and I got to marry him. He’s tall, and lovely and practical and smart. When we argue, we make up. When we struggle, we push through. When we love, well, there is no song, no poem, no flower that could help you understand. It’s friendship to the power of two. It’s trust in the face of despair. It’s warm and good. It took me so long to find him and then, Dysautonomia found me. How is that fair? It breaks my heart that he has to live my diagnosis with me. My husband; my friend. A commitment in sickness, but where is the health? I want to be the wife he can run away with, when our child-rearing is done. The wife he can play with; he’ll chase and I’ll run.

I’m lost, so empty. See, I had a great career. I was a teacher, and I loved it. I worked with kids who had exceptional ability. My last job was teaching a small group of gifted child writers. And I still think about every child I have ever taught. I still yearn for a classroom of my own and a chance to engage in those exchanges when learning is the light illuminating our world. Where sparks fly and inspirations blaze. Where questions and commentary, connections and community fill me with hope for the future of our world. I miss being their teacher. I miss seeing them shine and watching their possibilities unfold. I want to be the one lighting the bonfire, I have so much tinder for the fire. But now, I just teach myself. Patience. Every day. I grit my teeth and get through the next thing, I swallow my shame about what my body won’t do.

But I’m really glad you asked how I am. Because even though I am all of those things I write about above… I am also amazed, so genuinely gobsmacked by this life. I have lost so many of the things that meant so much to me. I had very specific plans for my life, for all the things that I thought I should achieve. But I am finding out something quite extraordinary.
I actually have, SO much.

I have everything that matters.

I have love. I have a purpose. I have words (and I intend to use them!) Being sick is not a picnic. But it is a bit of a fast track to finding your true self. And in spite of everything, I am back to the basics of Rach. For the first time in my forty years of life, I like me. I have so much more insight and empathy than I could ever have had before. I am writing and connecting. I am meeting ‘my people’, from right where I am. In the comfortable discomfort of the present situation. From my bed. From a place of real true, me. I feel all these sadnesses, all the fear and loss and frustration. But I also feel a peculiar kind of free. I feel like I have found: me.